BRAVING EPILEPSY'S STORM

By Kurt Eichenwald; Kurt Eichenwald is on the staff of The New York Times.

Published: January 11, 1987

I WITNESSED AN EPILEPTIC seizure for the first time in 1979, when I was 18. In the center of my college dining hall, a young man who worked in the kitchen had collapsed in a convulsion. Four students quickly piled on top of him. His arms and legs jerked violently and, in the process of trying to hold him down, the students seemed to be smothering him. The young man's face, twisted and red, made him appear to be in great pain and, somehow, inhuman. Yet I could see myself in his place - I had just found out that I had epilepsy.

I did not want to say anything, but I thought the four students, in their panic, might kill the young man. So I told the largest of them, who by then had a headlock on the kitchen worker, to let go. The student brushed off my concern and seemed irritated that I would bother him at such a time. I paused, then repeated my statement in louder tones.

The student was angry. ''Look, kid,'' he said, ''I'm a pre-med. I know what I'm doing. What makes you think you know so much?''

I opened my mouth, but no words came. Instead, I walked to a corner and leaned against the wall. As the young man's convulsions grew more violent, I whispered an apology to him and began to cry.

Just four weeks before, back home in Dallas, a neurologist had diagnosed my epilepsy. The doctor warned me - and so did members of my family soon afterward - that if I did not keep my epilepsy a secret, people would fear me and I would be subject to discrimination. Even now, seven years after that scene in the dining hall, it is difficult for me to say that I have epilepsy. Back then, it was impossible. In the years since, I have had hundreds of various types of seizures. I have experienced the mental, physical and emotional side effects caused by changes in the anticonvulsant drugs I take each day. Yet, for the first two years, I refused to learn about epilepsy. My fears of being found out were my real concern.

But from the beginning, I kept a sporadic record of the impact epilepsy had on my life. I wrote notes to myself and eventually made tape recordings, expressing feelings I thought no one else could understand. Later, I asked my family and friends to record their own feelings about dealing with someone with epilepsy, promising not to listen to the tapes for years. I heard the tapes and read all of the notes for the first time in preparation for this article.

My note-taking began the evening after the kitchen worker's seizure. In my room, I took out a piece of paper and wrote: ''Look, kid, I'm a pre-med, I know what I'm doing.''

EPILEPSY IS A CONDITION ENCOMPASSING about 20 different types of seizures, uncontrolled bursts of electrical energy in the brain. Convulsions, while among the most dramatic, are only one type of seizure.

According to the Epilepsy Foundation of America, there are more than two million Americans with epilepsy. Half have what I have, idiopathic epilepsy, meaning there is no known cause for the seizures. Of the two million, partly because of misunderstanding about the symptoms, about three-quarters of a million go undiagnosed or untreated.

By the time I arrived for my freshman year at Swarthmore College in 1979, I had already had many seizures, although my family, friends and I did not know it.

''You always had these staring spells, but it never worried me,'' Mari Cossaboom, a longtime friend, recalled. ''Everyone always said they were happening to you because you were tired.''

My staring spells - periods of a few seconds of mental absence -had been going on for as long as I could remember. Although I mentioned them to my doctor and my parents occasionally, the events did not seem significant.

Then, in my first semester at college, I was horsing around in the dorm with my roommates, and I fell, hitting my head against a chair. I had a concussion. No one to this day knows if the concussion affected my seizures, but the staring spells soon increased in frequency and severity. I learned they were different from other people's passing moments of distraction.

I remember once, in the dining hall, suddenly realizing everyone was looking at me. My lap was wet. I thought someone had thrown something at me. In fact, I had begun to stare while holding a glass of Coca-Cola in my hand. It had fallen between my legs and shattered.

I do not remember my first major seizure, which followed soon after. Mostly, I remember my own stunned silence. My memory of the visit to my first neurologist, in Dallas that Thanksgiving, is sketchy, although, sitting in a hospital hallway waiting to have my first CAT scan, I recall thinking that I might have a brain tumor and could die.

After the scan, an electroencephalogram and other tests were over, my neurologist told me that I had epilepsy. I was overjoyed. I did not completely understand the meaning of the diagnosis, but I knew I was not dying.

The doctor gave me several warnings: Never tell anyone unless necessary, because I might be ostracized. Call it ''seizure disorder,'' not epilepsy, because fewer people would be frightened. Try to choose a profession as free from stress as possible.

For a long time, I followed his advice, afraid that if the truth were known, I would lose my friends and never get a job.

I was given a prescription of Tegretol, an anticonvulsant, which I believed would stop the seizures almost immediately. I was wrong.